Besides Paternalistic Bioethicists and Doctors, Who's Afraid of Their Genomes? Nobody Much

Over at Slate, Virginia Hughes has a nice article dealing with the hysteria over disclosing genetic information to patients and parents. She basically points out that there is precious little evidence that patients have much difficulty understanding the uncertainties and risks associated with genomic information. It's time to stop treating genetic information as though it is somehow especially toxic - it's just more information for a person to take into account when making various life and medical decisions.

Hughes cites the horrific case in which paternalistic physicians withheld genetic information from parents about the risk of early onset dementia in one of their children. As Hughes writes:

Though I’m sure the researchers meant well, their implicit message—that a nonexpert couldn’t possibly understand the concept of an uncertain risk and would therefore be harmed by the knowledge—is not only patronizing but probably false.

Yes, the message of timorous and condescending bioethicists and physicians is, for the most part, false. Hughes cites her own experience after taking a genotype screening test from 23andMe in which she discovered that she had some genetic variants that suggested an increased risk for melanoma and heart disease. She described her immediate reaction as "panic," but she has evidently, and quite properly, gotten over it.

And she is far from alone in getting over her worries about genomic information. Hughes cites a recent New England Journal of Medicine study of subjects tested for genetic variants that significantly increase their risk of Alzheimer's disease that found that the results did not increase their levels of anxiety. In my 2011 column, "Bioethicists Can't Handle the Truth," I reported the results of that same study and many others that showed that patients and subjects are not harmed by having access to their genetic test results.

In fact, I am so unconcerned about genetic information that I have posted the results of my genotype screening tests online at SNPedia for anyone to view. See also my January 2011 Reason feature article, "I'll Show You My Genome. Will You Show Me Yours."

It is way past time for 25 or so states that have restricted the right of citizens to obtain their genetic information from direct-to-consumer companies to lift their bans.

The whole Slate article is well worth your attention.

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  • Hugh Akston||

    On the other hand, Warty's blood sample ended up killing six lab techs, and forced authorities to burn the lab down to contain it.

  • $park¥||

    Are you saying The Thing was a documentary?

  • Whiterun Guard||

    Come to think of it, I haven't seen Mary Elizabeth Winstead since then...

  • Whiterun Guard||

    Oh look at Baily, countering Anti-Genome Hysteria with Pro-Genome Hysteria.

  • Whiterun Guard||

    I owe you an 'e', put it on my tab.

  • Ron Bailey||

    WG: If allowing people to freely obtain and access their own genetic information is "pro-genome hysteria" then I am, indeed, a hysteric.

  • Whiterun Guard||

    Is there a marker that shows you are genetically pre-disposed to hysteria?

    I was just being (somewhat) glib, of course you aren't a hysteric or promulgating hysteria. Frankly, as a science journalist who hasn't murdered at least thirty of your brethren for crimes against humanity, I'd say you're so rooted in patience and calm that it would take the light from hysteria ten billion years to reach you.

  • Whiterun Guard||

    Hey Ron, did you make it say 'Geonome' in the third from last paragraph on purpose? You know they had Lucy murdered for less than that.

  • Ron Bailey||

    WG: Whew. Fixed. Thanks.

  • Trespassers W||

    So you admit that Lucy was snuffed out!

  • Trespassers W||

    One thing about 23andme: it also tells you what you have DECREASED risk for. That sure took the sting out of learning my vulnerabilities.

  • ||

    I just got my results today.. still pouring through it. Some of it troubling but most of it surprising.

  • johnl||

    Pre-med students are, on average, the least numerate people in the science building. Physicians are terrible at math and they think everyone else is even worse.

  • T||

    Lawyers. Lawyers can't do math to save their lives.

  • mad libertarian guy||

    It is way past time for 25 or so states that have restricted the right of citizens to obtain their genetic information from direct-to-consumer companies to lift their bans.

    As long as an "expert" is there to claim that people can't handle the truth, there will be a bureaucrat there to support it being illegal to learn the truth.

  • NL_||

    My paternal grandma had Alzheimers and my maternal grandpa had Lewy Body. Since genetics are implicated in both forms of dementia, it would be nice to quantify my risk. If I have a high chance of losing my marbles, I want to know.

  • johnl||

    You're posting on Hit & Run.


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